Posted 3/16/2016 5:59 PM (GMT -5)
Hello everyone, it has been some time since my lasting post. There have been a few bumps in the road. Our plans to meet with Dr. Zelefsky at Sloan Kettering got stopped in its tracks by the flu. First my hubby then 2 days later me. We had to cancel appointment with Sloan, hotel, amtrak, etc. We were very fortunate that we did get full reimbursement and this was the night before we were to leave.
After recovering, my hubby was talking to his buddy in California who is an MD who suggested he try and see a RO at Upstate Cancer Ctr. in Syracuse. Being the close buddies that they are my hubby decided to do that and we got in to see Dr. Bogart there who is the head RO in the Prostate Program. Very nice visit. However, he did tell us that the Vero was NOT being used for prostate at this time. He also said that they were having some glitches with it in general and have not used it in awhile. He also said they do have the TrueBeam by Varian but they are not doing any SBRT on prostates. I questioned why then did the website say just that and he said website needs to be updated. Hmph! We felt this was a wasted appt. He did offer my hubby the 7 weeks of ebrt. He said that because of my hubby's issues with slower urine flow he felt he was not a candidate for seeds since he said the needles would most likely cause a bit of inflammation to the urethra. I asked if there were any plans to start SBRT for prostate and he said there were no plans to do that. Why in the world would a new cancer center that has 2 machines capable of SBRT not use them? I don't understand. The resident who was in the room with all of us said," Actually SBRT for Prostate is just investigational and there are no real studies to prove it works." WHAT?? I wanted to speak up and say something but felt it would be a waste of time. My husband gave me that knowing eye sideglance and we both just wanted to finish up and be on our way.
Next up was our trip to NYC to see Dr. Zelefsky at Sloan. We did this on the 10th of this month. Amtrak there, hotel overnight, appt, then amtrak home. Now this appt. went very well. He was extremely open minded and intelligent. He did a DRE on hubby and later hubby said out of all the ones he has has this one seemed to be the most thorough. He said slight lump on right side with very little enlargement. The doctor told us that they had a group of doctors review hubby's MRI, Bone scan and biopsies. He told us that they all felt as he did and that was that the PIRAD5 spot on the MRI was significant and obvious and that the biopsies do not reflect that spot. He said that the biopsies taken by our doctor in Rochester completely missed the mark. My hubby and I took a breath on that one. What he then proposed was to have another uronav fusion biopsy by a doctor whom he believes to be the best for this specific situation, Dr. Behfar Ehdaie at Sloan.
He then wants the team to review the results before a treatment regime is set up. He believes that my hubby may have a Gleason 8 or higher in that spot and if he does he would like to start with hormone therapy to shrink the prostate a bit before starting SBRT; 5 sessions for a total of 40 gray. He says the hormones will be very short term but he needs to know what is going on in that significant spot before proceeding. If the biopsies come back as before he will be fine with going straight to SBRT which at Sloan it is called "SHARP".
He did tell us about all of the visits that will be required before that first SHARP(SBRT) treatment. He WILL use Spaceoar when he puts in the fiducials because of my hubby's inflammatory issues in his colon. There will be 3 of them put in. One other thing he wanted to check before we left was to do a residual urine test because my hubby says he takes awhile to completely empty his bladder. Things moved very quickly and the nurse was in to do the scan. Hubby went to the bathroom and did his best to empty everything out. When the test was done she told us that hubby was still holding 237 cc's(close to a cup) of urine in his bladder. The doctor came in and asked to repeat test which showed the same results. I don't really know how this affects things (hubby does have BPH) but doctor was still ok to go forward. We received a ton of information packets about everything that will go on and were told that the doctor doing the biopsies will call us. Dr. Zelefsky was so warm and genuine to us. He told us anytime we have a question to just call him. My hubby and I were very satisfied with Sloan BUT were very PO'd at the Rochester biopsy issues. After leaving and coming home the social worker called us and discussed possible free housing in NYC offered by the Am. Cancer Society so that was very nice we thought. We also found out that Amtrak is offering a buy 1 get 1 companion ticket free for the northeast corridor. We called and hubby would qualify for it. So that will save us a bit. We are still trying to wrap our minds around this whole fiasco. The time wasted makes us shake our heads. I was hoping hubby would be where 0311 is now.
!!!WAY TO GO 0311- YOU'RE DONE !!!!
It is what it is. So now here we go again. This will be hubby's 3rd trans-rectal biopsy in 3 years. I hope this will be it. Crossing fingers.